"The Truth Shall Make Ye Fret." — T. Pratchett

Being kind to your body, and nasty assumptions

I’ve had a couple of posts fermenting in my head, while low on expressive language spoons. This one just occurred to me, hanging around Twitter because it suits my concentration levels today. 🙂

Mentioning Skate, my (recently deceased) goldfish, on there got me a couple of skateboarding-related followers. In this case, it’s less annoying*, since I coincidentally spent the late ’80s and early ’90s as a purple-haired skate freak. (My, how the scene has changed!) Wasn’t spectacularly good at it, but enjoyed it anyway.

For years now, I’ve been too physically decrepit to consider this a good idea, but would like to do it again if I can get some of the musculoskeletal problems worked out enough. Ditto for cycling, swimming, and a few other things. I did start cycling again a couple of years ago, and had to stop with the inner thigh weirdness, exactly the same thing that messed up my knees and made me stay away from bikes before.

Even most of my own family have assumed that skating was what got me into this mess in the first place. Probably because of the “That looks dangerous, and I don’t understand why you’re doing it” factor. Actually, I strained some muscles and reinjured a knee (already with a torn ACL) once. It’s only indirectly responsible.

The more salient bit there: I got out there and did lots of physically demanding stuff, knowing I probably had a (second) torn ACL. And other injuries. Without waiting for proper recovery or rehab. I tended to push even harder because I was having problems. It’s particularly sneaky, since sometimes it can feel like “Shao Lin shakin’ for the sake of his soul” #, when it’s really you persisting in hurting yourself. All this adds up, and cascades after a while.

Treating your body like a balky piece of machinery will not do you any good whatsoever. It can be a form of self injury, the same as cutting yourself; you’re not going to treat your body that way if you really love yourself. I was going to link to an excellent video on the many ways in which self harm can manifest itself, but Jane has removed it from YouTube for some reason. You can also injure yourself with your own mental scripts, and you will not do this if you really love yourself. You will find ways not to generally run yourself into the ground–physically, mentally, or spiritually– if you love yourself.

I still have to remind myself of these things, daily.

In a rather twisted way, all this did have its upside. I finally learned the hard way that pushing myself too hard, past any reasonable point of physical endurance, is not a good idea. I’ve also had to develop a better sense of living in my body, and how to treat it more kindly. The extra layer of mild (compared to how it can present!) generalized tardive dystonia** has not helped matters, but has put more pressure on me to treat myself better.

That’s one of my major personal challenges in working on duyukta. Besides continuing to be mindful of what my body is doing, I’m hoping to start into Tai Chi once we’re settled in CA, to try to balance things out some. It’s too easy to fall into not really living in your body, especially if you’re a woman, and even if you’re doing a lot of athletic stuff.

Considering that a lot of us get ourselves into trouble through pushing ourselves too hard, I got extra honked off again at the apparently frequent perception that people must be causing their own musculoskeletal problems through being lazy slobs. Especially if we’re not small people. And I was a lot fatter from endocrine disruption when I was much more physically active, and also trying to beat my weight (therefore my body, which is me) into submission. I ran into this during my last attempt at PT/rehab, earlier this year:

I’d been a bit concerned about developing a huge dowager’s hump like my Nana had. The hard, muscular “buffalo hump” I have developed is, indeed, apparently the beginning of it. Nana’s was attributed to osteoporosis–as is still common, research to the contrary–but, if so, that was the only sign of it. (This also made me feel safer, then I started getting an obvious hump.) She’s exactly where I got the strong tendency to buzz around like a dyspraxic hummingbird, and you’d think she’d have fractured other things if her bones had been brittle. Being that active and accident-prone is a great way to accumulate and exacerbate muscle injuries, however. She also had a flat back and wonky knees. At least the hump turns out to be preventable, even if it’s a shame she didn’t know that.

On a related note, this is one of the reasons it makes me want to scream and throttle professionals when they just assume that I’ve gotten myself into this musculoskeletal mess through being a couch potato, all evidence to the contrary. Messes caused/aggravated by having trouble sitting down*, and by overtraining, require rather different management. (Even if it hurts, I’m going to use it until the muscle refuses to work anymore. Not always good.) This is one of the main reasons I had to discontinue PT recently, besides their neglecting to take obvious trigger points into account with stretching and strengthening. I assumed they would, since the practice claims to treat myofascial problems, but apparently not.

Knowledge is good.

* Frequently literally. Sitting down for long has been uncomfortable since I broke my tailbone 20 years ago and set up trigger points in every nearby muscle, leading to sacroiliac weirdness. This has led to other muscular strains.

What’s behind this, besides “not emaciated==lazy”? I think it’s the same old blaming. If we’re having disabling problems, we must have brought it on ourselves in some way. Even if the proposed explanation makes no sense whatsoever. And hating on “lazy, fat” people sure is popular. It’s weird projection, and it too frequently keeps people from getting the kind of help they need, or any at all.

Which brings me to another post from Womanist Musings I ran across today: Fat Hatred Or Not? You Decide. She offers an excellent example of projecting perceived qualities of one group of people you don’t like onto another group of people you don’t like, as hatefully as possible.

It’s hard not to see the connections with disability.

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* Just try using the A-Word (autism, autistic) and see how many keyword-searching hateful followers that gets you. Argh.

** “Similar to idiopathic dystonia, young patients with tardive dystonia tended to have more generalized distribution of the dystonia” Lots of painful spasms started while I was still on neuroleptics, and the doctor admitted it was related–changed meds, and kept me on extra Xanax or Klonipin as a muscle relaxant–but never said the word “dystonia”.

It’s been much worse since I moved to the U.K., since the NHS is weird about benzodiazepines, thanks to earlier overprescription and a huge class action suit. Flexeril/Skelaxin/etc. don’t work for me. And I just figured out a few months ago that it’s not fibromyalgia, it’s the same old crap! I am also concerned about stigma if I seek specific treatment, since it did come from neuroleptics, and I’ve already run into medical stigma here over the (bogus) bipolar diagnosis. “You brought it on yourself by being crazy, now live with it” is not helpful.

I’ve never skated – on a board. Did twice go to rollerskating birthday parties. The idea of roller derby – a current cool trend – frightens the sinews out of me, for all its “Real Girl” cred.

Evan of Wellbeing and Health has posted several posts in the last week about being mindful. And being at home in our own skins. Lots of interesting comments about whose body we are talking about when we say ‘my’ body. Similar to issues you wrote about when you had some spoons.

Dystonia is indeed a big thing. It is also a hidden thing. I have worked my hands and my back into some untenable positions.

I used to rollerskate a lot when I was younger. Really wasn’t good at it, and fell down a lot, but it was fun. 🙂 I have no idea why the large motor dyspraxia/weird proprioception made a bigger difference with the wheels firmly attached to my feet, but it did. With a board, I had an easier time telling where it should be in space than where I should be in relation to it, but it was still easier. *shakes head*. I wince just thinking about roller derby!

Ah, I will have to check out Wellbeing and Health–sounds like some interesting posts there.

Yeah, the dystonia is a major invisible disability–and rarely considered as a source of chronic pain. Barely treated, it’s done a lot to hurt my quality of life the past few years. I hope you can get your hands and back straightened out!

Finding out more, now I’m actually less prone to kick myself over turning into a caffeine and nicotine fiend–particularly the nicotine. No wonder my reactions to caffeine totally changed; it’s all about the dopamine! I used to hyperreact like I was on speed, now I need a coffee top-up several times a day to try and balance things out. Pretty soon, I want to try to give up the tobacco again–this time using enough nicotine products. The muscle spasms have gone absolutely crazy every time I have cut back, much less tried to quit–not surprisingly, I’ve seen other people with dystonia report the same thing. Not many people seem to recognize the dopamine link there, while blaming people for smoking.

Once I’m where medical cannabis is legal, I am sooo tempted to try that. Haven’t touched the stuff since the dystonia started, but that is a major thing it’s supposed to help. (Actually, legality isn’t the main thing stopping me now; I’m still vaguely embarrassed to admit it, but social isolation is the main barrier. I’d rather not have to go and hang around pubs hoping to see somebody dealing!)

I should probably also add that I know I was lucky in the way I reacted to benzos; an awful lot of people do become physically dependent. I got some psychological dependency going for a while, but they did make life much more bearable.

Not considering/knowing about the very real sensory issues and overload, doctors assumed that I had a huge mess of anxiety disorders (panic disorder, GAD, and even agoraphobia when I avoided overwhelming stimuli). Anti-anxiety meds will blunt your reactions to sensory issues, but do not address the problem. At all. Nor do the various forms of therapy aimed at changing your responses to anxiety-provoking situations; the sensory stuff kicks in before the anxiety-related thought patterns they’re looking at.

Learning that the sensory issues are real, and how they’re working in my case, let me figure out some ways of coping with them, directly. Even if CBT does not work directly to stop the sensory reactions, you can learn to change your reactions to the “symptoms”, once you know what’s going on, besides learning to work around overloading situations in the first place. That’s even without my previously-unrecognized hypoglycemia/diabetes: eat a piece of fruit before leaving the house, avoid >50% of “anxiety” symptoms while out and about. Now I know that I can manage this without uncomfortably sedating myself.

The meds did, however, greatly help the muscle spasms. Very possibly for the same reasons that I don’t have many opioid receptors now (wipe out dopamine receptors, you also wipe out related opioid receptors), I have never had a physical problem stopping taking rather hefty doses of benzos, besides just losing the muscle relaxant effect. This is the only type of psychiatric medication I would consider taking again. A lot of people do run into problems.